Do you trust what your doctor tells you?

Would you trust your family and friends above your doctor? And should you? Lucy Trevallion investigates

When it comes to taking medicines, people are less likely to trust evidence from medical research than the experiences of friends and family.

According to a survey of 2,000 British adults, only one in three people trust evidence from medical research

That’s according to a survey of 2,000 British adults conducted by the Academy of Medical Sciences (AMS), an independent body representing medical science. It found that only one in three people trust evidence from medical research, whereas two in three trust the experiences of friends and family.

It’s normal to listen to those close to you, and if someone you know has a good or bad experience of a particular drug, that can be powerful. But it can also distort the facts if their experience isn’t typical. And given that medicines are rigorously tested before and after they are licensed, it’s worrying that most people don’t trust this research.

Health information helps you understand and make decisions about your condition. If people don’t trust it, we’ve got a problem.

The problem of finding reliable health information

“The issue is that people are bombarded with information from different sources,” said Elizabeth Butterfield, Board Member of the Royal Pharmaceutical Society and a Pharmacist Consultant. “There’s limited time to ask questions in medical appointments, or questions don’t come into people’s heads until after they’ve left.”

Claire Murray, from the Patient Information Forum, a non-profit organisation dedicated to creating clearer health information, said: “The main problem is that health information is not meeting people at the right time in the right format. We know from our conversations with patients that information can be a bit of an afterthought in the NHS. The challenge is that it’s very individual and depends on which condition you have or which setting you are in.”

If someone you know has a good or bad experience of a particular drug, that can be powerful. But it can also distort the facts if their experience isn’t typical

Patients may not know where to find reliable information – and media coverage isn’t always helpful. For example, in 2014, the National Institute for Health and Care Excellence (NICE) recommended lowering the threshold for offering statins to prevent heart and circulatory disease. This reignited debate about whether we should trust pharmaceutical industry evidence, the lack of available data, and the role of the media.

Conflicting headlines followed, including ‘A cup of Earl Grey [is] as good as statins at reducing risk of heart disease’, and claims that statins could prevent the flu jab from working, but could also slash the risk of death from cancer.

The level of concern generated from this led the Chief Medical Officer for England to write to the AMS asking them to offer solutions. The AMS report said: “Healthcare professionals were left confused about whether they should offer statins, and patients were not sure about whether they should take them.”

Creating more accessible information

The Patient Information Forum has called for health services to have ‘information champions’, to ensure there is accessible and relevant information at each step of a patient’s journey. Ms Murray said: “I spoke to a man with diabetes and learning difficulties, who was given lots of printed information [which wasn’t suitable for him]. It took him 18 months longer to learn how to control his diet than it needed to.”

Above all, don’t be afraid to ask. If you haven’t had all the information you need, ask for it. Don’t be scared to ask questions

Claire Murray
Patient Information Forum

The AMS report, which was part-funded by the BHF, said that health information should be made clearer. For example, it could include more infographics, have clear summaries before the detailed information, and explain risks and benefits. It called for NHS Choices to become a source for accessible summaries of evidence on the benefits and risks of medicines. And it said patients should be involved in research and creating health information.

Angela Camber, 70, from London, is a former BHF patient representative. She had a heart valve problem detected as a teenager, and has since had several heart valve operations. She now suffers from heart failure and has an ICD fitted. She said that open communication between patients and medical professionals is needed to build trust. “The distrust of healthcare professionals can be confused with patients not understanding or having enough information,” she said. “To tackle this, it’s important that patients help to create the information.”

What can you do to find the information you need?

Professor Helen Stokes-Lampard, Chair of the Royal College of GPs, said: “While we would encourage patients to discuss their health with friends and family, they should always remember that in many cases their loved ones aren’t trained healthcare professionals.”

Patients can ask for longer appointments with their GP or speak to their local pharmacist about medicines. “Pharmacists are approachable, accessible, and offer a listening ear,” said Mrs Butterfield. “There are private consultation rooms in all community pharmacies. Pharmacists have access to the latest information and are all trained for five years as experts in medicine. We’re well placed to decipher sensationalist press or something a friend told you from the clinical evidence.”

Above all, don’t be afraid to ask. Ms Murray said: “If you haven’t had all the information you need, ask for it. It’s too easy for professionals to assume you understood something. Don’t be scared to ask questions.”

How Heart Matters is helping

We’ve set up a Patient Information Panel to advise on our resources, such as Heart Matters and our free guides, to help us make our information clearer and more relevant to you. Find out more about our patient panel.

Fight for every heartbeat

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